Seth (Ohio, USA)

Child's Name:    Seth

Birth Date:    February 13, 2001     

Angel Date:   February 13, 2012

Parents:   Ross and La Tisha

Siblings:  Stone (brother) dob 10-15-99  dod 2-24-11

Reside:    Ohio

Date Diagnosed:   November 2007


*When Seth was about a year old, his parents knew that he had some of the same delays that his older brother, Stone, had so they started their search to find a diagnosis.

*At the age of 3, Seth was able to use some sign language to communiate his needs (drink, dog, more please, and his favorite book).

*At age 4 1/2, Seth started to walk without his Kay Reverse Walker.

*When Seth turned 6 years old, his brother Stone was diagnosed with MECP2 Duplication and then they were able to finally get Seth's diagnosis in November after mom was tested and found to be the carrier.

*At the age of 3, Seth's only health problems were constant constipation and four seizures which were controlled with medications.

*At the age of 7, Seth's seizures started to get out of control and it affected his ability to walk.  He started to lose balance and fall a lot so he started to use a wheelchair.

*At the age of 8, Seth started to aspirate his liquids.  Thick-It was used at first but eventually he went to not drinking or eating anything by mouth.  A G-tube was placed and he received all his feedings through the tube.

*At the age of 9, Seth started to get lung infections, pneumonia, and bronchitis several times.

*Seth is now 10 years old and is still having health issues.  He was admitted to the hospital in March with H1N1 that almost cost him his life but Seth is a fighter and he got better.  Since then Seth has had two more bouts of pneumonia.

Other Information:

*Seth always loves to be read to and to listen to music.

*He loves his family and is a happy little man.

*He has lost so much of his abilities in the last few years but he is a wonderful boy who stays strong.

*His mom and dad are very proud of him.